A Declaration of Our Rights to Health Data

If you enjoyed Steve Downs’ recent post about the Open Notes project, here’s a group with related interests. Health Data Rights, a group of organizations, corporations and individuals, is calling for a people’s right to have and share health data. They assert, in part, that -

“We the people:

• Have the right to our own health data;

• Have the right to know the source of each health data element;

• Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form; and

• Have the right to share our health data with others as we see fit.”

The group includes Dossia, GoogleHealth, FasterCures, Microsoft and PatientsLikeMe. The rights have been endorsed by Adam Bosworth, David Kibbe, Esther Dyson, Tim O’Reilly, Steve Case and nearly 300 other individuals.  If you’re interested in learning more, here’s their site: http://www.healthdatarights.org/

The Pioneer Portfolio team and the Robert Wood Johnson Foundation have been interested in liberating health data for a long time, as we think that liberated data enables innovation.

If you’re interested, you can follow the conversation about Health Data Rights on Twitter.